I have had RLS since my late teens and I am now 65 and have been taking 0.88mgs Pramipexole for about 6 years now. I only get the usual symptoms at night when I go to bed and mostly it has been working fairly well. Not a cure but made sleeping quite bearable. However for the last few months my nightly RLS has got worse as the Pramipexole is not having much affect. It was taking hours to actually get off to sleep so doctor gave me zopiclone sleeping tablets for a week which worked really well and has got me back into a better pattern of getting off to sleep and although still waking throughout the night it was easier to get back to sleep again. I stopped the Zopiclone and experimented with different combinations of Pramipexole (sometimes doubled the dose) and co codamol or tramadol. The Pramipexole and co codamol worked the best but not as well as I would have liked.
Went back to the doctor today (who is very nice but did not know much about RLS) to report my experiments and to ask if I could try Pregabalin or Gabapentin. She said these were very heavy drugs and why don't I just try taking Zopiclone (experimenting either with or without Pramipexole ) every night as it seemed to work well before. She assured me it was a safe sleeping drug and as I only needed one tablet of 3.75mgs for it to work I will be okay.
What do other sufferers think of this regime and has anyone tried Zopiclone at night to control RLS. Should I be taking medication specially designed for RLS to get the best relief or is it more a case of whatever works is okay!
Written by
jeanjack
To view profiles and participate in discussions please or .
Hi jeanjack, you do have to join the rls-uk forum before you will be able to post this question on there. You do not have to pay a subscription to join the forum but of course the more paid up RLS-UK members we have the better.
Like you I was on 0.88 mgs per night (approx 2 hours before going to bed), until the doctor said I should be taking 2 tablets instead of 1, and guess what! - most night I sleep without any problems. Give that a try. I also take 2 co-codamol (5/800mg) tablets just before going to bed.
Your symptoms seem like augmentation, in which case you should not be
increasing your pram but rather trying to get off it. Increasing the drug will bring short-term improvement but longer term will only make the problem worse. The Johns Hopkins Restless Legs Centre (just google it) has lots of info on augmentation as does The Willis Ekbom (the new name for Restless Leg Syndrome) Foundation(wed.org). Getting off pram or any dopamine agonist is extremely difficult as you suffer withdrawal because your body is
addicted to it. I (a Canadian) am going to John Hopkins in Baltimore to see Dr. Christopher Earley, a world authority on RLS, to help me get off pram.
. On the JH Restless Leg Centre site there is a link to a video which has Dr. Earley explaining augmentation. Don't try to get off pram by yourself.
Cold turkey withdrawal or even slow weaning off will bring intolerable
discomfort with the RLS going into major mega overdrive. Also, google
Dr.Mark Buchfuhrer (a recognized authority on RLS) You really need
I completely agree with all of the above.Was on Pram for nearly 9 years and ultimately it just made my RLS worse.Have just done cold turkey and weaned myself off it.A grim experience but I feel so much better.RLS symptoms now as baseline level which is not perfect but bearable.UK GP's are miles behind with their understanding of RLS .
Mosk1966 can I ask if you take anything now for your symptoms? Can you tell me how long it took after stopping Prami to retun to baseline level? Thanks
Hi.I stopped taking Pramipexole only mid Feb.5 nights of torture and then started to turn a corner.Dr Early from John Hopkins does a 10day info sheet on what to expect during withdrawal.Basically you need to clear your diary and rest when you can.My symptoms are now much less and more localised.It had spread to my arms and hips.Not perfect-Typing this at 2.00am but frel so much more in control of my body and symptoms and much better in myself.Taking Pram suppresses the body's ability to make dopamine.The more drug you take the more the body will rely on it and crave more of it.I really don't think you can rely on any GP Info because they just don't know enough about this drug and it's impact.I've been told to 'up my dose' considerably by a neurologist .Worst advice I could be given.Much better to investigate Ferritin and iorn levels and try and deal with those.All info at John Hopkins
Thanks for reply moski1966,yes I understand about augmentation (unlike my Neurologist who yesterday tried to push high doses of Dopamine meds onto when I had stated 3 times I suffer augmentation! ).He obviously didn't know what it meant and just stared at me as if I was a mad woman when I explained.
I augmented on Prami and came off it 14 months ago , I stayed off 8 months but I did not go back to baseline so I then started Neupro patch as it has the lowest rate of augmentation. All was well until I developed an allergy to the adhesive after 3 months, I swapped onto Ropinerole which made me feel dreadful sick, headache etc.I stopped Ropinerole on Thursday and even though taking meds to help it is hell on earth.I did sleep Thursday night as Neuro gave me a strong sleeping tablet but I have been pacing since 7am yesterday morning and feel shocking.I have slow release tiny dose of morphine and clonazepan but still cant keep still for longer than couple of minutes.Where I go next I not sure as dont want to become dependant on sleeping tablets.Currently going to take one alternate nights as I have to have some rest due to other physical condition. Definitely not easy!
Apologies.Only just found this.Am so sorry that you're going through such an awful time with the RLS and drugs.So much help and info on there.Dr Early from John Hopkins hospital seems to be the leading authority on RLS and managing it.Google him and watch him on You tube.Methadone seems to help control RLS for a lot of people....The UK seems so far behind with how to help.I've completely lost faith and given up with medics.I'm lucky as my RLS is currently manageable.
It also depends on the individual doctor. I am in the US and my GP knows all about this and she is the only doctor out of 7 that I have for many things, that prescribes my meds. She is constantly consulting my other docs, like my neurologist, my sleep doc, etc and I know that is kind of amazing. if a doctor WANTS to know, they WiLL. So you cannot just say that GP's do not know. Some do. I know I am very lucky in that aspect of my health care.
Sorry! Only just found this query.Didn't take long to return to baseline.About 10 days? I still get RLS but not as strongly or frequently as I did on the drugs. Good nights and bad nights but for me it's manageable.Trying dietary changes and taking iorn and magnesium.Don't want to take drugs if I can avoid them.
Didn't feel as though Zinwas doing it on my own and am more than happy with my decision and it's results.I could have gone to a GP at any point.I knew what to expect and I was prepared for it.Not entirely sure what anyone else could do or have done for me...Lack of sleep for a few nights and strong symptoms wasn't going to cause me any harm other than feeling terrible for a few days.My aim was to get to a baseline where I could decide how to proceed without my symptoms being clouded with drugs.My feeling was that the drugs were feeding my dependency/addiction(same thing if you can't manage without the drug).I personally now feel in a much better place and am thrilled to be drug free.I'm not telling anyone else what to do or how to do it but am simply sharing my experiences!
It is not that your body is addicted in the purest form of the word "addiction". The body gets "dependent" on the levels of dopamine. Dr. Buchfuhrer, since I see him referenced here, does take you off the dopamine med altogether and replaces it with methadone or a true narcotic, depending on the patient of course. The best thing to do, and this is really easy, look on this site for the post titled "Brilliant Article" and it explains his method exactly in an interview. He also did a webinar on dopamine meds and augmentation. He does not do a slow wean, so experts differ here. he takes you off it, like I said, like pulling off the proverbial band aid and replaces it with strong meds to counteract the DAWS, "dopamine withdrawal syndrome" which is significantly worsened RLS. he does NOTY do it the way the way Dr. Earley does it. In one of my FB groups there is a video journal, day by day, of a woman doing a slow wean off Pramipexole and on the 12th day she wanted to DIE, literally, and her husband was shocked to find her in the condition she was in. I WILL say she is not one of Dr. Buchfuhrer's patients, she is of the other one though. I see what this poor woman is going through, and it is pure torture. I have dealt with Dr. B for 18 yrs and defer to his method of getting off dopamine meds strongly. I would NEVER go through what that poor woman is going through. Dr. Buchfuhrer uses the narcotics, if the patient can tolerate that class of meds, and it is a much smoother transition, does NOT look liker a torture session. And, he only uses the narcotics short term for the DAWS period, if the patient does not want to continue it after the DAWS is over. I would never ever go the other method. I can see the torture in the video journal that goes day by day, and there is no reason for it. To ME, slow wean is slow torture. Just my observations, but I would NOT go the slow wean EVER, personally. Again, it is not addiction to dopamine, dopamine meds are not addictive in the traditional sense of the word. And, it is not your body that is dependent, it is your brain, since RLS is neurological. This is what I have observed and also learned from Dr. Buchfuhrer who's website is rlshelp.org Go to the treatment page.
Thank you for your reply popank. Did one prami and 2 co-codamol last which went really well. I think it's the co-codamol (30/500mgs which were previously prescribed for Rheumatoid Arthritis pain) that makes the difference so may stick with that combination and keeping the Zopiclone for really bad nights.
I used to take 3.18mg per day of Pramipexole. If you take 0.088 then that is the lowest dose available and is massively small a dose if you are taking only 1 tablet per day. I would think that giving up Pramipexole might be relatively easy. Those of us taking bigger doses often do so to treat Parkinson's Disease (PD) and if I wanted to stop Pramipexole I would run into some serious withdrawal symptoms. I found stopping very difficult with RLS being exposed as a major problem that I had been mostly unaware of.
If stopping very suddenly you may develop Neuroleptic Malignant Syndrome (NMS). Although, as you are taking such a tiny weeeny small dose it would be unlikely if you did experience this but beware as NMS is potentially fatal.
Having said all that I would have thought there was some scope for a significant increase in your Pramipexole dose. You may be able to keep going for another 6 years or more by titrating up to your maximum Pramipexole dose
Looking at wikipedia which you have to be very careful with as its accuracy is sometimes called into question the information there about Zopiclone is rather discouraging as well. Have a look at the link below
So often information from even such websites as the FDA and BNF the British equivalent is highly alarming often specifying worst case scenarios that you may never encounter. So for example, if you were to package plain water as a medicine then you would probably have to specify all kinds of alarming stuff for the patient information leaflet.
Anyway I wish you success with experimentation.
The new recommended dose for Pramipexole is now to take no more than 2 of the lowest dose pills. That is what all RLS experts now say because of the augmentation problem. Altho augmentation can still happen on the new dosage, getting off them will be a bit easier than trying to get off a very high dose. I recently weaned myself off of taking one Pramipexole, and i think i had one very bad night. Getting off higher doses will mean you will need the help of your doctor. Dr. Buchfuhrer uses strong pain meds to help his patients with withdrawals. Alot of people take either Tramadol or Morphine for the withdrawals.
I would stick to meds for RLS. Reason is I am on 2200 mgs. of Gabapentin for Neuropathy and when I tried to stop the Pramipixole (I am on 38mgs. for my RLS) my legs went crazy. So my Dr. told me to keep taking them. I don't know much about sleeping pills but if a low dose is helping you sleep and your Dr. feels they aren't addictive just take them. Whatever helps us get a decent night's sleep at our age is good.
Thank you for your reply Lee5. I agree with you that I would feel better sticking to RLS meds. Did one prami and 2 co-codamol last which worked really well. I think it's the co-codamol (30/500mgs which were previously prescribed for Rheumatoid Arthritis pain) that makes the difference so may stick with that combination and keeping the Zopiclone for really bad nights.
Lee5 have you got that dose right for the pramipexole..? Or is it a typing error. Your legs went crazy when you tried to stop the pramipexole because your body has got used to having the dopamine, stop the pill and the dopamine is stopped and the dopamine recepters go mad hence making your RLS go mad too.
The reason I tried to get off of Pramipexole is because some people on Gabapentin don't need it. It didn't work for me. Other than that I am quite happy on it. Have been on the same dose for years with no side affects. After not sleeping properly since age 18, walking the floors and sitting in hot baths at all hours of the night, to me Pramipexole is a miracle. Yes there was a typing error It is .38 mgs.
Lee5 I AM assuming that "38 mgs" of Pramipexole is a typo. Even a PD patient would not be on a dose that high. oops! just saw that was typo. Sorry! I figured it was.
jeanjack, you say .88 is your dose for the last 9 yrs. That is "teensy" dose, so I am not immediately jumping to the augmentation thing. After all these years, it could be the natural progression of RLS, since you say you are now 65. RLS is progressive and I would say you have been pretty lucky to stay on that same small dose all of these years. Zoplicone is a SLEEP med, that is correct, but it will do nothing o control your RLS. I did not see anyone else say this. It is a sleep medication, not an RLS medication, but combined with your other meds it sounds fine. Good idea to skip it a night once in while, so it will keep helping your sleep. it by itself would do nothing for RLS specifically.
Thank you nightdancer for your reply. I agree with everything you have said especially about the natural progression of RLS. I am really not convinced that Zopiclone will do much good in the long run so I am not going to take it. I am finding one Pramipexole 0.88 combined with a co codamol tablet 30/500mgs seems to be working well. I tried 2 Pramipexole tablets a couple of nights ago but woke up in the morning with a splitting headache. Not sure if it was just a coincidence so I am going to try it again. As you say I am only a small dose so I don't think 2 tablets will lead to augmentation.
Hi I started taking 3 Pramipexole a day to keep the symptoms at bay and benefited from it. My doc also suggested Pregabalin which worked as well but it gave me horrendous wind so I stopped it
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
oops! just saw that was typo. Sorry! I figured it was.
RLS and pramipexole
Coming off pramipexole
Pramipexole 
Weaned off Pramipexole. Gabapentin?
